Evidence of a problem
“She said you are the only one in your family that goes to school because all your family is retarded” were the words spoken to my 12 year old daughter at school on a Monday that she will not ever forget. She came home angry. Her inner activist was brought out and there was a fierceness in her eyes I’ve not seen before. She asked me to help her talk to her year advisor about it, which is a big step for a highly anxious, neurodivergent young teenager. Of course, I agreed. Before we went I told her that it would be difficult, and although being in the same classroom creates community, that her decision to stand up for her family could cause disruption among her friend group. I warned her that people get uncomfortable when we challenge their ignorance and their bigotry, even when it is unintentional.
The meeting with the year advisor went well. It’s sad I should feel we were lucky that the year advisor had a good understanding of disability rights and the experience of being disabled and having disabled family members, but that’s how it is. He assured my daughter that he understood how she felt, that what had happened was not acceptable, and that he would follow it up with the students involved. He also agreed with me that this would be a good opportunity to talk to other staff about the school making a more deliberate strategy to foster a school culture that is inclusive and intolerant of language, conversations and attitudes that harm others, and he committed to talking with his boss about it. Also sadly, I am only allowing myself to be cautiously optimistic about this because history tells me words are easy but getting action is not. That is how it is. But this conversation was a good start.
What I liked about this discussion, what was most encouraging to me, was that for the second time in over a decade of talking to one of my childrens teachers, I didn’t have to start right at the very basics of disability rights 101. This teacher understood exactly how my daughter was feeling and what she needed from him in response to this situation. It’s not a great record that this was only the second time, but it was encouraging none the less. He understood when I explained to him what exactly the problems are that we have with the situation. He understood her perspective.
My daughter has much well placed admiration for her siblings. It is true that she is the only one of them attending school currently. It’s more complicated than that, obviously. Let me tell you.
My oldest child is bipolar. They left school at the beginning of year 12. They were suicidal. They had been trying to manage their transition onto the drugs that keep them sane, while coping with all the horrific side effects of anti-psychotics, and attempting to do the Higher School Certificate. They couldn’t do it all at once. They were only 17, trying to manage more than what most adults could.
My oldest son is Autistic. He started school “late” due to atypical speech development, and left school to homeschool in year ten after a teacher bullied him for asking questions in class. He was labeled disruptive and non-compliant and excluded from class. For trying to understand an assessment task. I could have pushed through, forced the school, again, to take on it’s responsibility toward him appropriately. But, honestly, I was tired. After 10 years of constant work to make sure he was included and supported, and after the end to the funding that had helped with this a year earlier, I couldn’t do it any more. He was beginning to show signs of failing mental health, confused and hurt, and I valued his wellness over the battle for his inclusion in mainstream education.
My second son has experienced debilitating anxiety. He left school in favour of home education as well. I think the school was relieved when I withdrew him because it meant they didn’t have to do anything about his consistent non-attendance. Their lack of effort was confirmation enough for me that I did not want to persist with trying to support him through school.
My fifth child has been homeschooled since they left school half way through year one. The school staff were surprised when I told them my child wasn’t coping. They appeared to them to be doing “so well”. At home they were a mess. In meltdown or shut down almost the entire time. They had used all their coping resources up in their day at school. They did not feel safe enough to ask for the help they needed while at school so held it all in all day and fell apart at home. They were 6 and understood well enough how the system worked to know it was not right for them. They asked me for a break for a couple of weeks. At the end of that they asked me to never send them back. Over the years since they have slowly told me about the experience. If I’d know what was happening I’d have acted 6 months earlier.
My sixth child is about to start his school life. I’ve held him back, though, and he is starting a year “later” than most children do, at six years old instead of the more socially acceptable five years. He needed the time at home, gaining skills to manage his sensory sensitivities and difficulty understanding the social expectations we have of children.
Those are the challenges. Now let me tell you about the achievements.
My bipolar child is living independently, about to finish their studies toward a qualification in community services. They plan to work with disadvantaged and disabled youth offering them peer support and helping them achieve their goals. Their compassion, strength and courage astound me.
My autistic son is about to complete his third qualification along the path to running his own IT business. He lives at home with me (for now at least, I keep hearing plans about moving out!), and is a constant positive role model to his younger siblings, making regular contributions to the running of our home and spending time with them in activities of their choice.
My anxious son is a determined and highly motivated learner. He has worked hard in developing self care strategies for himself and is managing his anxiety well. He is currently looking for a job and hoping to move out of home once he has one.
My fifth child is curious and adventurous. They are learning at their own pace and steadily progressing. They let me know what they needs and want and push themself when they can to achieve goals they’ve set. I love the way their mind works, and can see them trying persistently to sort through all the challenges they face.
And the youngest? He is proving himself to be a smart, resilient and competent young person. I’m looking forward to seeing what he will achieve as he grows.
My daughters admiration for her siblings is indeed well placed. So the assault on her family, the challenge to her sense of place and value in society, and the betrayal she felt in the lack of support from her friends, was incredibly hurtful.
What went wrong?
I seriously doubt that the young lady who said those gut wrenching words about my children truly meant to cause the hurt she did. I mean, I think she meant to gossip, and possibly to be cruel. But I know she didn’t realise the full extent of the ramifications of her words. She likely didn’t realise that they would be felt with a violent impact similar to the damage of a physical punch to the throat. Yes, hearing things like that spoken about your family causes physical, visceral pain. I don’t think she realised the role her words play in the perpetuation of stereotypes and stigma that assault disabled people every day. She certainly doesn’t understand the impact of lazy language that is socially acceptable but rooted in a history of neglect and abuse of disabled people, language used to classify as broken and less than, and employed to excuse horrendous treatments, therapies and institutionalisation. She is young and hasn’t had time to notice the patterns of offhand invalidation and throw away comment dismissal experienced by disabled people daily. She couldn’t have consciously realised that in uttering those words she was using her power as a “popular” person to upset a social dynamic and cause my daughters friends to need to choose between their loyalty to a friend of many years or acceptance by a new friend whose approval is temptingly appealing.
I know she didn’t realise how simultaneously close to and far from the truth her words were. She couldn’t have known, because she doesn’t know my family. Hasn’t met them. Hasn’t even laid eyes on them once. But that’s part of the problem, isn’t it? They aren’t in front of her, because our education system doesn’t include them.
Our education system has failed my family. Time and time again. By not supporting. By not making big changes needed. By not making small changes needed. By making half attempts at integration. By responding to the fear parents have for the wellbeing of their disabled students at school by offering them segregated learning environments instead of doing what is needed to make the mainstream environments safe and welcoming. By responding to the challenging behaviours of disabled students with time outs, restraints, seclusion, and suspensions. By shutting our disabled children away, out of sight, out of the awareness of their peers. By depriving all students the opportunity to learn each others strengths, value, and right to an equal place in our society.
I have failed my family too. Do you know how hard that is for me to accept? It’s easy enough to lay blame on the education system. It does deserve it. And so do I. I could have done more to ensure my children were safe and included. Not that I’m saying I could have solved the issue of the failings of the education system on my own! Or even realistically done much more than I did at the time. I am only one person, raising six children. I made difficult decisions to care for the emotional and mental health of my children as a priority before changing the world. I didn’t have the support personally that I do now, and I didn’t know then about many of the resources available. What I’m saying is I wish I had. I regret not looking harder to find them back then. I regret that I didn’t find the energy, the fortitude, to get the support I needed to persist just that bit longer.
So, I know better now, and I’m going to do better. My youngest child is starting school next year. He is neurodivergent. I know we will come up against many of the same difficulties I’ve seen before. I’m wiser now, stronger, and better resourced. I’ll be doing everything in my power to ensure his school experience is positive and that he is included fully, from kindergarten until year 12.
Let’s do better
I’d like to ask you to join me. I’d like to ask you to join my daughter. We are speaking up, along with Family Advocacy, as part of a campaign to see change in our school system. It is time for change. Every child has a right to be educated alongside their peers in their local school. Making this happen is not a small change. There is much work that needs to be done. But it does need to be done. Everyone benefits from a fully inclusive society. Disability should not equal exclusion.
“Same Classroom. Same Opportunities.”
It is easy to get involved and you choose how much you want to do. You can go as far as talking to your local NSW Member of Parliament about it, or keep it as simple as taking a picture of yourself like we have done and posting it on social media using #sameclassroom. All the information you need is here: https://www.family-advocacy.com/what-we-do/systemic-advocacy/sameclassroom/